Tuesday, July 7, 2009


So as you all may know, Jayden's social evaluation took place on yesterday morning. He actually had two appts scheduled, the first was for genetic testing. That appt was RIDICULOUS! When the Dr walked in, Jayden was already in a really foul mood. He jumped on my lap and started screaming when the Dr tried talking to me, so I had to yell over Jayden's screaming. Then when I asked him to be quiet for me he had one of his fits. He was squirming on my lap and just very irritable. Then he started throwing toys around the room. The Dr then starts asking developmental questions. He knew that we were referred to him b/c the Developmental pediatrician suspected autism. So he asks, "How is his eye contact." I tell him, "Usually it's okay, but he won't make eye contact much in social situations." He looks Jayden in the eyes and then says "He's looking at me. His eye contact is just fine." Then he asks, "Does he have any repetitive behaviors like rocking or spinning." I had a hard time not walking out of the room at this point b/c right when he asked this question, Jayden was hanging off of my lap with his head and arms hanging towards the floor, rocking up and down and whining. I just looked at the Dr like he was crazy. WTH?!?! So then he says, "I really don't believe that he has autism. His behaviors seem typical of a 2 yr old boy." He seriously said this within the first 10 minutes of the appt. He had never met Jayden before. He went on about how boys are slower to develop than girls in all areas of development. I was very quiet for most of this ridiculous appt b/c I was afraid of what would come out of my mouth. So my husband did most of the talking. He told the Dr about how Jayden screams and does not do well in a room with children his age or younger. The Dr said "Well at his age, he shouldn't be expected to play with other kids. A this age they parallel play." I had to pipe in. I said "We are aware of that, but in Jayden's case, it is DANGEROUS to bring him in a room with smaller kids b/c he literally attacks them." So then he asks if we have considered childcare. At that point, I checked out of the appt b/c his goal was to make us feel like we were just being paranoid, over bearing parents. That point was proven when he asked us if we had friends with small kids. When we said yes he told us "Ask them if they think that the way Jayden acts is out of the ordinary." OMG. He went on to read articles from the internet about Jayden's celiac disease diagnosis, to recommend sedatives when we take him in public, and to recommend that we work on our patience. WOW. He decided that genetic testing was not necessary b/c Jayden appears fine. So that appt was worthless.

So we had an hour to kill before the social eval so we went to grab some lunch and came back to check in for his evaluation. He had a huge tantrum in the waiting room which included him getting angry and throwing his snack bar on the floor so I had to throw the snack bar away b/c I won't let him eat off of a hospital floor. Well the fit was huge. He calmed down and a few minutes later we were called back to our room. We waited for about 10 minutes and the Dr came in with an assistant and didn't waste any time. She immediately instructed Jayden to sit down and at first he ignored her but as soon as she opened her cart full of tricks, he sat down like a big boy. The evaluation was full of surprises, both good and bad. First she pulled out a shapes puzzle with squares and circles. Jayden put the puzzle together in less than a minute. He knew exactly where each piece went immediately. We were so impressed. Next she pulled out a page with a picture of different color crayons, then she handed him some colored shapes and told him to match the colors. I can't remember, but I do believe she showed him one example of how to do it. Then he matched each color with no problem, but struggled a bit with green and actually said "Oh no" when he realized that he was stuck. He finally got it though, and with no tantrum involved. Next she switched to ducks of different sizes and colors. She tried to get him in groups of colors, then groups of sizes. He only wanted to line them up, and at one point he put them all in "time out" facing a book! LOL! The dr was switching the activities so quickly and I was pleasantly surprised that he transitioned so well. But the Dr said that it may have had to do with how quickly she made the changes and that he immediately had something new and interesting in front of him before he could get upset. So things starts to get difficult for him soon. She showed him a page with a main picture, like a tricycle, and then three other pictures below it and asked him to find the other tricycle. He just ignored her. She tried three other times but he just ignored her. She called his name several times and he never replied. The same thing happened when she showed him a picture book and asked him to show her where the dog was. He ignored her. She even paused to look at his chart to be sure she was pronouncing his name correctly b/c he was not responding. But then when she showed him the same book and she pointed to the dog and said "Jayden what is this?" He immediately said "dog". And she continued pointing to the pictures and he would immediately identify them. So we realized yesterday that he does not point which is not good :( We didn't know that he didn't point. We never noticed. So that first part was to test his cognitive development and he did have some obvious delays there. Next we moved to a bigger room filled with toys, and this part would test his social play skills. He was so happy in there with all of the toys and it was so funny to see him switch from one toy to the next within just a few minutes. The Dr said it was good that he wasn't obsessed with any particular toy but that he could benefit from playing with one toy at a time for a bit longer than he does. Next came the moment that the Dr said really mattered, social play. She pulled out toys that required him to play with others. First she used a bubble blower. He was interested in the bubble blower, but he wanted to do them himself. When he saw that she would be the one blowing them and that we all were excited to see the bubbles, he immediately lost interest. He also refused to make eye contact with her. Next she did this thing with a balloon where she would blow air in a balloon and make him say "1,2,3, GO!" and let it go. He loved it, but she said that he still wouldn't make eye contact with her when waiting for the ballon to go. Instead he stared at the balloon instead of looking at her for her facial expression to prepare to release the balloon. Also, when he gave her the ballon back and waited for more he wouldn't look at her. WOW. So what about the perfect eye contact that the first Dr told us he had just this morning? I felt bad b/c I knew that the first Dr gave my husband false hope. I already knew that his eye contact was bad in public, but mainly when he is having a fit. I didn't realize that he refused to make eye contact while interacting with people. Next she tried to get him to feed a baby doll and a teddy bear. He refused to look at the doll or the bear. Then they gave the doll a birthday party complete with birthday cake. He put cake on the doll's plate but wouldn't help her to eat it. Finally the Dr came and sat with us while Jayden continued to play with the toys. As she explained to us her findings, Jayden pulled out the toys that he would have had to play with along with the Dr. His eye contact returned. He even grabbed the balloon and brought it to the Dr and looked her right in the eye and said "more". She told us that it seems like he is extremely nervous when he isn't in control and that may explain his lack of eye contact. It has so much to do with his social anxiety. So he scored very low in language and communication. The lowest score possible. He also scored low in cognitive development and social skills. The Dr was hesistant to score the evaluation mainly b/c she could see that most of Jayden's issues arise in social situations (with the exception of his speech delay), but that the scoresheet does not allow for "extra credit" points. From what she witnessed during the evaluation, the social score would place him on the autism spectrum, but then what she saw after the evaluation, would not. So she said what I had been thinking all along "Jayden is a very complexed case!" She expressed, that we will never know how much of this was caused by the untreated celiac disease but she believes that if we can help him with his extreme social anxiety, he will get better with the social aspect of things. So in her professional opinion, he does not appear to be on the autism spectrum, yet he does display some of the classic autism symptoms. So she diagnosed him with PDD-NOS, Pervasive Developmental Disorder. Again, she stressed that he needs to be in therapy b/c he can beat this. She suggests speech therapy, occupational therapy, behavioral therapy, ABA therapy, and a child psychologist to help with the social anxiety. All of which I will be fighting for. The government is cutting back on so much lately b/c of the recession. Early Intervention told me that they would be picking Jayden back up this month but that he will probably only be seen 2 times a month. That's not fair. It's just not enough for him. We need to help get him prepared for preschool b/c once he turns three the school system has to take over his therapy. How will he handle preschool if he has not had help with his social anxiety? Those that are making these decisions to cut back on the services that special needs children need to have a better life, obviously have not had their lives touched by a child with special needs. It's senseless. On a positive note though, b/c we finally have a diagnosis, we can finally get the ball rolling on his disability insurance which should help cover the cost of some of the therapy services that he needs.

Last night my cousin told me that Jayden is so lucky to have us as his parents. I know she means well, but I disagree. I think that WE are the lucky ones. Jayden has taught us to fight, to have patience, and to have faith no matter how rough life gets. At only 2.5 yrs old, he has taught us some very valuable life lessons am I will be forever grateful.

1 comment:

Deanna said...

This is a wonderful post Nia! It is amazing what children teach us. Glad the second eval went well and it is nice to just have a diagnosis to use as a general guideline but being the first visit w/ this doctor I am glad to see that she stated PDD NOS b/c this could be her first impression but it will not be confirmed until months to come depending on his continued observed behaviors. It's our job to advocate for our children and you are doing a great job!!! Best wishes to Jayden in his continued journey to learn and grow :)